Category Archives: Down Syndrome

Today is World Down Syndrome Day, celebrated by showing the ability. Although Bridget doesn’t have Down Syndrome one of her best buddies does. Honestly a part of me feels silly writing today, like I am jumping on the advocacy wagon for a syndrome my own child doesn’t even have.But today is important. Today you must see the ability. You must acknowledge that all children make an impact, those with Down syndrome, cerebral palsy, epilepsy, autism, multiple sclerosis and those children who are sadly typical without that something extra (pun intended). You must acknowledge, today and every day, that children are different. That adults are different. That if we were all the same the “r” word wouldn’t hurt. That advocacy means you stand up and speak up to support those who need acceptance and tolerance. When you see the world through your child’s eye you do not see race, gender, body-size or disability. They see their friend. World Down Syndrome Day is centered on choosing to see a child through their ability and not their disability. Children should be celebrated. Children should be encouraged to live life to their potential. Your child comes with unlimited possibilities and not one instruction manual.

Boo and her friends shouldn’t be pitied. They and their parents are not heroes. They live life to the fullest. Their milestones are celebrated a little more because they have worked hard to achieve the smallest step. Just like your child a person with special needs has determination, stubbornness, laughter and love. They go to school, join Girl and Boy Scouts, play sports and have friends.They also have something a little extra: sometimes an extra chromosome or an undiagnosed syndrome. But life would be pretty boring if the only ice cream we had to eat was vanilla. People shouldn’t be the same. We should celebrate our differences and our abilities.Take today 3/21 and celebrate those with something extra. Like jimmies.

Like this:

Is she going to be retarded? I asked the neurologist. Boo was 11 months old. She had two EEG’s and an MRI of her brain. They told us she had a “slow” brain pattern. That her development was delayed. That Boo would possibly need care for the rest of her life. That they don’t use the word retarded any more. They use intellectually delayed.I had moved from wondering if Boo would live past her first week of life to would she be retarded in 11 short months. It took another year for me to evolve from retarded to delayed. To understand and feel that a word is not just a word. That it matters what you call people. Here is why that revolution matters.The Merriam-Webster Dictionary defines retarded as “sometimes offensive: slow or limited in intellectual or emotional development”Why is this “sometimes offensive”? After all the definition simply states that Boo is limited in intellectual or emotional development. That is true. That is not offensive. She is limited. What is also true is she is gaining. Limited does not mean stopped. Here is why the caveat of “sometimes offensive” the dictionary also defines retarded as: stupid, obtuse or ineffective.My daughter is not any of these. She is not slow, anyone who has had to chase her down a hallway in her attempt to escape knows that fact. She is not stupid. The moment you meet her you see the spark in her eyes. Boo is not obtuse. She is sensitive and caring. Boo is not ineffective. The change she has made in my life, her classmates lives and some of yours disproves that definition. Words have power. Would you say nigger or faggot? No. Because you know in uttering those words you are hurting someone. So why is retard exempt? Because it is part of your vernacular, because you have always said it, insert an excuse here.Last year during this campaign people told me that the word isn’t used often anymore. That this is an older terms those of us from the 80’s use. But that is untrue. It was used last Thursday in Abby’s school. The administration used a video depicting dyslexia. Overheard in the assembly of middle schoolers: they are just retarded and dumb. Whispered, of course. They knew the word was wrong. They knew the word was insulting. They used it anyway.

When I asked the neurologist 5 years ago if my daughter would be retarded, I wasn’t being insensitive. I was not being derogatory or insulting Boo. I was uninformed. I was ignorant of the harm and tears this word can cause.Maybe you can use that excuse too. You were uninformed. You didn’t know that a word could hurt. Then you met Boo. Now you are not uniformed. Now you know that a word can cause pain. I ask you, the next time you utter the word retarded picture this face:

And ask, would you say that word in front of her? In front of me? In front of her family? If the answer is no, then you have your answer to the question is the word retard is just a word.When I first put this picture in this post I had the word RETARD stamped over her face. But the image made me gag. I cannot imagine my daughter as a retard (stupid, obtuse, ineffective). I hope the thought of RETARD over her face makes you shudder as well. I took the pledge, will you?

Our town is small. We do not have many businesses therefore the tax burden rests on the property owners. Frequently we see battles pitting the school department against the municipal side of the budget. This is the first time, to my recollection that we are putting students (and their needs) against one another.

I am extraordinarily grateful that this article was not about our town. Yet I live with a fear that it will be soon and we should explore ways to avoid it at all costs. Probably because this is the first time I have had a child in the “special education” cohort of the school system.

Which is not quite true. My older daughter goes three mornings a week for extra help in math. She has gone to summer school for math assistance. This is the only subject she struggles in and the school (and tax payers) have supported her needs. I am sure it is for the care they show all students and also to increase the MCAS standing of the school. A quid pro quo, if you will.Boo on the other hand is a different situation. Boo brings tremendous value to her classroom. Her classmates will grow to be more empathetic, understanding of another’s needs and more accepting of their peers. Inclusion means that while Boo is exposed to peers for advancement while she advances their sense of community. But she is a drain on the school system. Boo receives physical, occupational and speech therapy from the school system (which in my opinion should be the responsibility of our insurance company to pay). She has a dedicated 1:1 therapist that is with her during the school day. This is for Boo’s safety (she wanders) and to make sure she can participate in class activities. That is, after all, the purpose of inclusion: to have Boo participate. Without the aide she simply cannot. Due to the layoffs, that other school system has modified some 1:1 care. Now a therapist will have 2 (or more) children under their responsibility. Let me explain why that is an impossible task to give that staff member. Logistically it is difficult. If you take your two children to the playground you know they will not leave. If a therapist takes Boo and her other charge, she cannot have Boo on the slide and the other child on the swing. How can she make sure both are safe? What if one has to use the bathroom? Education-wise it is still ill-advised. The therapist sits at a table with Boo and reviews counting. If she has another charge, how can the children and the therapist concentrate and make sure the program is run correctly and with consistency? Just as a teacher with 30 students in a class cannot make sure every child understands the Vietnam War, a special needs therapist cannot split their attention equally with more than one child and be confident they are getting the most out of the child. Having another child is a distraction for all.

But who should pay? That is really the question and you are probably not going to like my answer.

I believe the parent should pay for some of the care and education. It is our child and our responsibility. However we cannot. We simply do not have the money to pay. Just as the town budget is stretched a parent of a special needs child is under a financial burden unlike no other. Our medical bills are higher, we pay out of pocket for supplemental insurance and at age 5 we are still purchasing diapers, wipes and pull-ups. Due to the amount of physician and therapy appointments we also cannot work 40 hour work-weeks. A family with a special needs child budgets in ways you never imagined. It is constricting and inventive.

Here is where I will again anger many. I also think that the tax payers should not have to pay for music, sports, clubs or electives. English, foreign language, history, math, science? Yes. That is education. But electives, including music and art, should be the responsibility of the parent to pay. Those electives are also a drain on the school system. There are pensions, salaries and healthcare costs associated with those staff members just as the special education staff.

There are a lot more students taking electives than using the special education department.

I am not sure of the answer. I do believe that we should pay a portion of Boo’s care. I firmly believe that our insurance company should have to pay for her therapies that happen in school, including her ABA therapies. I think some sliding scale should be in place to take some portion of the expense off the community.

However, if I am going to pay privately for Boo’s public education than I believe I should also have to pay for my older daughter’s music instruction.

How to survive life as a parent with special needs. Okay that is a lofty goal! It is hard enough navigating parenting with a child who is typical. Add in a few diagnoses and life can get overwhelming. But here is my go-to list for surviving the life I never expected. 1. Keep your sense of humor. If you have lost your sense of humor because it was drowned by vomit, poop, tantrums or tears Google comedian Steven Wright. How can you not chuckle at thinking: “Is it weird in here or is it just me?” (Steven Wright)

2. Make a daily goal. For me it used to be brushing my teeth at least once a day. Now it is making sure I get to work without evidence of Boo’s breakfast on my shoulder.

3. If you feel all alone in this life as a parent with special needs, you probably are. But it is your job to find support. To scream at the top of your lungs I NEED HELP. If no one hears you, let me know and I will add my voice to yours.

4. Make your child’s teacher/therapist/doctor your friend. Find out about their lives. Interact with those who your child spends most of their time. It will enrich your life in ways you cannot imagine and make issue #3 far less likely to happen.

5. Have a glass of wine. Not the bottle a glass.

6. Allow yourself to cry, laugh, grieve and rejoice all in the same minute. It doesn’t mean you’ve lost your mind but that you may have found it.

7. Find “ME” time. I know, I hardly ever do. But when I can run for just 30 minutes I come back a much nicer wife, mother and person. It doesn’t have to be every day (oh how I wish I could find me time every day) but make time for you.

8. You hopefully have a partner. The child’s mother or father. Guess what, they are your partner in this and they too are parents with special needs. So lean on them. Consult them. Do not do this all on your own and remember that partner is there. Make them take your child to therapy, a doctor’s appointment or do drop-off at school. For too long of a time I tried to be super mom, handling everything for Boo. Once I let David in our lives were much easier. If you don’t have a partner look at rule #3.

9. It’s okay to wear your sweat pants with a hole in the crotch for a few days in a row. Just try to remember to wear underwear so you are not arrested for pulling a Miley Cyrus at school drop-off.

10. Mix-up your friends. Try to anyway. Keep a healthy mix of parents with special needs and those with that normal kid who just talked back to them. It will make you appreciate your own little wonder. It will also help to make sure you feel alone.

11. It’s okay to get pissed off. Seriously pissy at this life you didn’t expect or prepare. And once you think you’ve got it handled someone will take the rug out from under you. Consider yourself warned. It is okay to question yourself, your God and your child’s doctor. It is not okay for any freaking one to tell you that you are not allowed to feel anger, grief or whatever emotion you may be going through.

12. Your house doesn’t have to be Martha Stewart Spotless. I will say the state of our life is directly reflected in the mess state of the kitchen. But I have stopped saying to people, sorry for the mess. Instead I say, This is how it always looks and today is actually better.13. Remember you are more than a parent. You are more than a parent of a child with special needs. You are you and may I say you are doing a fine job of navigating this life the best you can.

Lastly, and this is important: Five years into this life as a parent with special needs I will say this is our life. What we make of it. A glass of wine helps. But what really makes me survive?

The friends who have stood by to hold, comfort and more importantly laugh with me. So find some of those and keep them close. They will help you keep your sense of humor and your sense of self.

When I was little I had a very active imagination. My parents would put me to bed and I would spend hours imagining a life other than the one I was currently living. Sometimes I was a princess, sometimes I was a warrior and sometimes I was just a girl living a different life.Each night it was the same. I would wait until Mom put out the light and close the door and I would line up my stuffed animals all around me. I would begin to imagine this fabulous life where everyone was equal and no one was sad. As a child I did not know that prejudice existed. That children were born with different needs and talents. That adults would look at a child and judge. The parent and the child would be judged and found lacking. That you would be judged for who you loved, your gender or your skin color.As an adult I wore blinders. I saw those who were disabled but did not see past their disability. I saw children who appeared disobedient and thought not like mine. I admit to not seeing a person’s color but not standing up to those who did. I lived my life on my terms, never seeing how we are all intertwined.Then I had Bridget and my ideals evolved. A person who was a wallflower became an advocate. It took Kristi’s Our Land to put my dreams in perspective. She dreamed of a world of empathy and wonder. One where we looked at others with the imagination of a child. Not with the jaundiced vision of adulthood. A land where it would matter that our children had a disability only to make people stop and see the wonder that is this life we live.My best dream ever? It is a dream where Abby & Boo’s story show the world what wonder and empathy look like. A dream where we judge others like we did back in the sandbox. Not by color, race, creed or gender. But with the opening line:

Do you want to be my friend?My best dream ever is the one where our children never lose their empathy. That they continue to look at the rain with wonder. That our children make friends first and judgments last. A world where we shared the joys, the heartache and the triumphs of living a life full of blessings.The cool thing is? My dream is coming true. I was astounded this week when not once or twice I was stopped on the street and told that this blog affected them. In a positive way. When someone sees Boo and looks with kindness and not judgement. That some parent knows they are not alone. A world when we are allowed to break and heal with someone there to help and not to judge. A life where others view Boo through Abby’s eyes. My best dream ever is the one that never ends. A life where Boo shows others how to live in a world of empathy and wonder. Thanks for being with me on my journey to make my dream come true.

Oh and if you haven’t checked out Kristi’s Our Land yet I recommend the trip. It’s not about living with a disabled child. It is about living your life to be better. There are posts about body image, friendships and not judging a person (or yourself) before you meet them. Kristi is the blogging equivalent of Oprah’s AHA moment.

When Abby was young we research schools, private and public. We started in Montessori and would have kept her there if there was an option of a larger school. When we had Boo that changed.

We could no longer afford private school. Thankfully that is the only thing we had to compromise with having Boo. But still, the choice to move to public school for both girls was one we thought long and hard about.Long enough to contemplate giving up wine, vacations and chocolate.Thankfully we live in an awesome town. One that has a great educational program, both for the typical and the special. Abby had a hard transition to the formal education program, rather than the more nurturing Montessori. It took time for her to find her groove, but she did. I haven’t really thought of our choice for public school. Boo has thrived, simply thrived in her program. Unlike other families we have fallen into a simply awesome program. And then it happened.I was at the grocery store and ran into a mother of a child who was a classmate of Boo’s last year. Her child had moved on to kindergarten. I asked, innocently enough, how E was enjoying kindergarten. For some reason I assumed that she was in the same public school system. Until the mom informed me they had gone the private school route. “You have to have Boo go there for kindergarten”, she innocently said.In my head I am thinking do you remember Boo? She is right here sitting in the shopping cart. Unlike other 5 year-olds who no longer fit in the cart. Boo is being Boo. Cute, adorable Boo. But not anywhere on par with her own child.I simply reply that we love the program she is currently enrolled. In my mind I am thinking that we won’t know until late Spring if Boo will be ready for kindergarten or if she will spend a 4th year in pre-K. Which, if needed, I am generally fine with. Until a mother innocently assumes that Boo is “normal” and will be following the normal trajectory of education.This mother didn’t mean to make me catch my breath. It is just one of those moments when I hit the wall. The wall of knowing that with Boo I have different decisions to make. Ones that will impact Abby more than Boo. Ones where Boo takes precedent of Abby. Our family. Knowing that where we live matters. That we cannot move or change careers or schools at a whim. Knowing that to give Boo the best life possible we all make sacrifices.Even Abby. Although she doesn’t know it. Abby is in public school because the cost of a special needs child is quadruple (made up figure) what a typical child costs. That we need a larger car to fit Boo’s chair. That we have to pay for extra health insurance . That I have to limit my hours at a well-paying job to be there for Boo’s appointments. Limiting my paycheck and David’s as well. We haven’t saved as we had before Boo. Our savings account has not grown as we expected. This Christmas was a perfect illustration of our new situation. That we didn’t spoil our loved ones as in years past.We are so, so, so, very lucky to live in a town with a great public school system. One that nurtures both girls. That allows both girls to not only achieve their potential but surpass it. I don’t begrudge Boo. David doesn’t even consider it. Abby, if she knew, would be okay with it.And I am too. Until an innocent bystander assumes that Boo could just transition to a typical classroom.

Like this:

Like many, I have fallen trap to a Facebook hoax. I reshared a link that stated Jenny McCarthy informed the world that her son did not have autism. Thankfully she was quick to rebuke the misleading information. By misinformation I am speaking to the fact that she has never said her son does not have autism.

I rarely reshare celebrity stories or thoughts because I usually do not believe (or care about) the hype. But in this case it hit a nerve.

I admire Ms. McCarthy for being a proponent of autism education. I admire her dedication to her son and her willingness to say this is what autism looks like. I do wish more people would say MAY look like. As any friend of mine with a child who has autism will tell you, they are unique from the color of their hair to their behavior to their abilities.

However her strong campaign against vaccination is something I cannot agree. It worries me when people use a celebrity endorsement to justify their own actions or non-actions. It is one thing to decide to go gluten-free to do your own investigation on how your child will react. It is another not to vaccinate your child (and potentially expose other children) to a life-threatening disease. In the only published study linking vaccinations to autism the lead researcher lost his medical license due to his irresponsibility in the conduction of the study and the study was revoked from medical publication. I understand that you can interpret a study to suit your purpose. Pro- or anti- vaccine link. I am not speaking to that as I am completely inept at that discussion.To paraphrase the Vice President of Clinical Innovation at Cedars-Sinai stated to the National Geographic: you can have an opinion but you cannot state that opinion as fact. I have two different views on this subject, from two ladies I both respect and admire. The first is a mom who decided not to vaccinate her children. However she did this after reading medical journals, doing her own research and consultation with her children’s pediatricians.The second is a mom who vaccinated her children, but to her it was a deep seeded belief to vaccinate. Her mom was a polio survivor. But survivor is probably a poor term. Her mother was a polio warrior. One who suffered in the time before vaccination. She fought polio until her death at age 70. Her children watched her suffer and live with grace.Myself? I honestly didn’t think of it with either child. I automatically vaccinated them. However with Boo I spoke with her pediatrician and they modified the schedule due to her health issues. Our Pedi is great. She is very conservative when it comes to vaccinations–even the flu shot–and will minimize the quantity of vaccinations given at one visit. And if you have a runny nose? She will reschedule your appointment and not six months from now. Just call and stop by. She is quite awesome, in addition to saving Boo’s life five years ago.

I am on my soapbox here, and I admit it. I also have no problem telling you and everyone else my opinion on something. But you should never use a “Jenn said” as your reason for choosing a course of action with your child. As far as autism and the decision not to vaccinate, research has proven that there is no correlation. In most cases this would be a non-issue. The studies have proven time and again that there is no link. However celebrity causes will continue to advocate for more research. Which is great, that is what you should advocate: more research not telling a scared mom that a vaccine gave her child autism.

The decision not to vaccinate your child should be based on your own research, consultation with your physician and a heck of a lot of soul-searching.

I haven’t played with Lizzi in a while. Not that I haven’t been thankful, just been to busy to give Thanks. I am sure I’m not the only one! To suck up show how thankful I am here I am breaking the rules (go figure) and doing 12 things of thankful. One for every month of 2013 I survived.

January, I was thankful for the Liebster award.February, I was thankful for Abby’s sense of humor and honest about who her favorite person is (hint, not me).March, I was thankful for people understanding that the word Retard means something different to me now and joining me in abolishing the word.April made me thankful for Jimmy Buffett as I realize he gives us the soundtrack for a laid back life. The sound track, not the manual.May I was thankful to be able to tell people what drives me crazy. June I was not thankful for yard work but happy to know I am not alone.July I was thankful for all the ways my girls make me smile. August I was thankful for husbands.September I was thankful the girls were back in school. Also that boys are gross. October I was thankful for Boo’s therapists and friends that let me take the easy way out.November I was just thankful for Boo. December I am thankful that I have come a long way since January.

Boo has had to undergo neurological/psychiatric testing over the past two weeks. There hasn’t been any issues, other than her turning five. In our state (for insurance purposes, I believe) once you turn the ripe old age of five you are no longer allowed to be undiagnosed and/or globally delayed. Boo had to go twice, for two hours each day, to meet with a psychologist for a battery of tests. (I think battery is a strong word, she didn’t hurt Boo). The tests varied from intelligence/cognitive testing to behavioral/autism to play skills. Part of me wanted Boo to bomb the testing, securing her services. The good mom in me wanted her to excel. Typical Boo she did a little of both and managed to frustrate the doctor. I wish I could have Kristi’s artistic talent to demonstrate the following (I tried, I failed, I didn’t want to hurt your eyes):Doctor: Boo stack the blocks like this (imagine, two next to each other and one on top)Boo: (hands the doctor the blocks after banging them for a minute)Doctor: Can Boo climb onto and out of an adult chair?Boo: Moves said chair next to exam table, proceeds to climb on top of chair, to table, to window sill in an attempt to get out of the room. We happen to be on the 10th floor and very thankful the windows don’t open.I’m impressed that Boo realized she had to do something with both the blocks and the chair. The doctor is distressed that she cannot follow direction. At the end of the two days the doctor asked us if we had any questions. I ask her how she feels Boo did. She had previously thrown out words: autism, PPD-NOS, mentally disabled, intellectually disabled, ADHD and a bunch of other terms. Her response:I have to score the tests.Hm…now those that know me know that I tend not to be brushed off. I (politely, I swear) reminded the woman that she was an experienced professional who must have some instinct to how Boo had tested.After a moment or two she told us that she honestly didn’t know. That she wanted to show the test results and video to not only Boo’s neurologist (whom I adore and trust) along with other colleagues. How Boo performed was baffling:She shows signs of Autism: Will not look the doctor in the eye.She shows signs that a child with Autism wont: She told the doctor to “look” and sought her attention.Autism: Hand flapping, quickly distracted, would not follow directions, toe walkingNot: Social, engaging with materials, attempts to please, would put heals down when prompted by cueAutism: lack of safety awarenessNot: asked for help when trying to get down off the exam tableIntellectually disabled: Cannot copy a “t” on the paperNot intellectually disabled: can hold a pencil in the correct graspID: Cannot follow a two-step directionNot: Knew she needed a pencil to draw on paperID: Poor motor planningNot: Pushed chair to get to top of exam tableThe examples go on and on. In the end the doctor said at this point Boo is a Medical Enigma.Where have I heard that before?She will convene a team (about damn time) to look over everything. She agrees (as do neurology and genetics) that whatever is going on is neurological in origin. In the end it doesn’t really matter what “term” they give Boo. I think Bridgetitis is a lovely term. We will continue to advocate, get therapies that work and love her the same with or without a medical diagnosis. At five years old, she remains undiagnosed and we are still okay with that.

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I’ve written before about Boo’s wandering. It started about as soon as she came off the walker. If she is outside you blink and she has eloped. It is beyond scary to know your child will wander off and not realize she is unsafe. I even had a bright idea and e-mailed NIKE about putting a chip in children’s shoes.They refuse, on principal, to take unsolicited advice. So I remained scared and worried. A lot of my fear is due to Boo’s lack of verbal skills. Then a police officer friend told us about Safety Net by LoJack. Let me state right here, I am not being paid nor has LoJack asked me for any type of endorsement. They have no idea I am even writing this post. Safety Net is a bracelet Boo wears. It has a rocking purple strap and about the size of a watch. Okay, it is a tad big on her….but she is a petite little thing! She wears the bracelet 24/7. If she wanders we alert 911 and provide her name. Our local department has her signal ID. If we travel we let LoJack know our destination and they will alert authorities that we will be in there area. Unlike cell phone and GPS signals, LoJack uses a radio transmitter that can be used in any condition and locale. Since we like the mountains, we were relieved. Her bracelet is waterproof. She can use it in the bath, the pool and the ocean. And if we can convince her the sand.

It is expensive, $400 for the first year. We asked our families to contribute. We let them know what we were doing and asked that instead of getting her a birthday/Christmas present this year they take whatever money they normally would have spent and put it towards her safety.

All responded with generosity. They understand that Boo doesn’t “play” and doesn’t need material things…but she does need to remain safe. While her bracelet will not stop her from eloping, it will help us locate her with a great chance of finding her alive.

The system arrived within a day. We put it on Boo. She did NOT like us putting it on. But now that it is securely on, she has been showing off her “bracelet” to everyone she comes into contact with. She has slept, bathed, done crafts (with grandma I was banned by Abby) and gone to school with it.

She has been wearing the “bracelet” about a week. She has asked for it to be “off” once and a while but for the most part has realized it is staying put!

If you see Boo around town make sure you ask her to show her new rocking accessory.

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(c) Kerri Ames and Undiagnosedbutokay.com (2011 through current date). Unauthorized use and/or duplication of this material without express and written permission from this blog’s author and/or owner is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Kerri Ames and/or Undiagnosed but Okay with appropriate and specific direction to the original content.